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SV: [IPk] Rant: Whose diabetes is it anyway?



Hi Tori,
I just wanted to thank you for what you wrote. I'm sure I'm not the only
one on this list who can identify myself with your story.
Thanks again!
//Ishtar

-----Ursprungligt meddelande-----
Fren: email @ redacted [mailto:email @ redacted] Fvr
Tori
Skickat: den 7 mars 2003 10:08
Till: email @ redacted
Dmne: Re: [IPk] Rant: Whose diabetes is it anyway?

This is a very complex situation to try and analyse, and I don't think
any 
one "rule" or theory holds true for all young diabetics. I was diagnosed
at 
age 4. My mother was my primary care-giver as far as my diabetes went
for a 
long time, and although she encouraged me to be independent, and I'm
sure 
attempted to educate me on the importance of control etc, it really
didn't 
sink in.

Back then, of course, there were no such things as glucometers, but I
knew 
that if my urine tests came back "negative" or "trace" everyone was very

happy! So, even when they said 2%, I would assure my mother it was neg
or 
trace. We also had to deal with a paediatrician who wasn't very 
knowledgeable about diabetes at all, and didn't feel a child would 
understand or comply with directions. A recipe for disaster. Add to that

the fact that MDI and CSII were a thing of the future. As may have been 
predicted, I ended up in hospital with very severe DKA at age 11, for 
2-3mths. Finally my mother moved me to a new doctor 250miles away to try

and get control of the situation.

The new doctor was a marvel. He treated me as a responsible person who 
could take care of herself. Over time he kept my mother informed, but it

was I who made all management decisions. He put me on the pump after a
year 
of MDI.

You'd think that would do it really wouldn't you?

It didn't. I am an educated person, I was a gifted child, I was very 
capable of understanding what I was doing and the potential risks I was 
taking. Did it stop me from indulging in risky behaviours? Hell, no! I 
didn't want to hear it. The pump was seen by me to be my saviour - at
last 
I was free to behave *just like everyone else*. Because my mother no
longer 
had control of my diabetic management, it was very easy for me to keep
her 
in the dark. I refused to test my blood sugar for almost 25 years
(although 
I did submit to 3-day hospital visits where I was profiled every 3mths).

The point is, I loved the freedom, I loved being "non-diabetic" for all 
intents and purposes (although I have *never* been ashamed of my
diabetes), 
I loved not having to worry.

To cut a long story short, I fell pregnant (twice) unexpectedly after I 
married at age 20, and my HbA1cs were ridiculously high for pregnancy
(15, 
17), and yet I still had two beautiful, normal, healthy (although 
premature) daughters. I KNOW how lucky I was. Did I learn? God, no!

When did I learn? Sadly, only after another very severe DKA experience
in 
1987 where I almost died and after my mother died 6.5 years ago. I don't

believe that I was doing things to appease authorities at all, I was
doing 
things because I never believed I would have a long life anyway, and I
was 
(and am) determined to make every single second count. I was behaving 
irrationally and irresponsibly because I'd gotten away with it for so
long. 
I was doing things because I refused to be held back by diabetes. I
usually 
managed to pick up on hypos and treat them quickly - and the DKAs
happened 
over months before I hit breaking point, so my body was unaware anything

was wrong. After my Mum died, i suddenly realised I was only answerable
to 
me, I no longer had a safety net.

How do you teach a child to be responsible? I wish I knew. I wish my
mother 
had known. I do think it's important that children's questions are
answered 
*completely* rather than attempting to protect them by leaving out the 
nastier things that can happen. I also think it's important that
diabetic 
children communicate with older diabetics who have *been there* - it
gives 
their stories far more credence than someone who has for example
developed 
dm at age 15, or 20, or who is not diabetic at all. I think children
should 
be allowed to rant and rage at the unfairness of it all, and grieve what

they "might have had". I think children shouldn't be disciplined for
small 
errors that anyone could make - even people who have been diabetic for
5, 
10, 20 or 50 years. I think parents have to remember that their diabetic

children are people first, and diabetics second. They are normal people
who 
just happen to have a chronic illness. I do think children should
realise 
(and how you teach this, I do not know) that when they cheat or refuse
to 
test or do silly/stupid things, they are only hurting themselves, no-one

else. Bodies are not a weapon to emotionally blackmail others with, they

are not a tool which can be repaired after you seriously damage them.
Most 
of all, just love them, and let them know you'll stand by them, no
matter what.

Tori


At 10:46 AM 7/03/2003, you wrote:

>Recalling my first couple of years with diabetes, it seems to me that 
>instilling a sense of personal responsibility in a child who has it is
a 
>much more crucial step than achieving absolutely perfect bgs by any
means 
>necessary. What will happen if a child with diabetes who has been
nagged 
>to do every test and every injection since age 5 or so goes off to uni
at 
>age 17 and suddenly doesn't have Mum or Dad or a teacher or a nurse 
>looking over his/her shoulder? Disaster, that's what. I've heard of
four 
>Oxford undergraduates admitted to the John Radcliffe Hospital in VERY
bad 
>states after alcohol-and-no-insulin binges within the past few years
(and 
>no doubt there were more).
>

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